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respite breaks with care

pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
edited January 2020 in Coffee lounge
Morning all.....well the first day of the year found me in tears!
What on earth for?

Especially after my cheery post yesterday about blessings and 2020.

I`m hoping someone can help me through this patch of ????

For over 7 years, Direct Payments have given me a respite fund of £2184 a year.

I`ve used it to take myself and a carer on short breaks. It paid for both of us for accommodation, travel, meals, plus carer`s wages.

it`s worked out well.

But when I asked for a new care assessment, they suddenly tell me my respite fund rules have changed! I can no longer use it to pay for my expenses...just the carer`s.

Well as I now have to pay towards my weekly care...almost £40 a week....I cant afford to save for a holiday.

Social services have said I have to take my respite breaks in nursing homes!!!!! I didn't think that would have the affect on me that it has...Yesterday I went to look at a nursing home a few miles from where I live.

It is a newly built place..large, in nice surroundings...modern facilities...beautiful furnishings and décor and yeh..like a boutique hotel.

Then the residents began coming into the coffee lounge....yes, they were old...some very old......I like old people and I go to a regular social for the 55+ and I am probably the youngest at 67.....but this care home...oh I dunno....I just didn't feel right....and I`ve cried relaying the tale to my carer this morning.

Why do I feel like this?

Is it because I can no longer holiday like I used to?

Can anyone shed any light on my predicament? 

Replies

  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    Just guessing but I would say yes, it's because you cant holiday as you used to as they've suddenly changed the funding rules. Presume you and your carer used to go out and do stuff, see the sights, go for walks etc. Cant believe they've said take your holiday in a care home!! Sorry I can think of no solution, unless there is someone with an accessible holiday home here on the forum who you might be able to do a deal with x
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Thanks Fran.
    Just been looking on MS sites..they have a respite centre in Oxenhope..Keighley West Yorkshire...about 15-20 miles from me.
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    For you and your carer so you can get out and about a bit? Hope that works out ok x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Sorry to hear this @pollyanna1052! I know how much you relied on those breaks. 
    Community Partner
    Scope

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  • icarusicarus Member Posts: 31 Courageous
    edited January 2020
    we have a holiday cottage on snettisham beach in the middle of rspb reserve i am working at making it more disabled friendly it needs a better access ramp (edited by moderator*) it is a 3 bedroom bungalow it used to be a sailing club house it is slightly quirky if you like older properties no problem occasional spiders  but warm clean and dry will be renting it out soon perhaps you could check it out and do a full review .keep in touch  lots of times it is empty during week  cant leave you without a holiday!!! best wishes steve

    *The postcode has been removed from this post due to being a public forum. If you would like more information about this cottage then please message icarus.
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @pollyanna1052
    Regarding the post from @icarus. I live just around the corner from Snettisham. Beautiful spot, highly recommend it; north Norfolk coast a stone's throw away.  Sandringham and Hunstanton on your doorstep. Brancaster and Sheringham etc a bit beyond but not unreachable. Do please consider it. Happy to check everything out for you. North Norfalk coast listed as a place of outstanding natural beauty.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Thankyou for your replies.
    You are very kind Icarus xx

  • icarusicarus Member Posts: 31 Courageous
    edited January 2020
    google earth  109   (postcode removed by moderator) mother in law lived their for many years it used to be pictured in the norfolk guide book as an old lady wedged herself in the back doorway holding on to a rowing boat with her children in during the 1957 flood --all 3 survived!. All the coastline is accessible on the coast hopper bus The back door of the cottage looks across the beach the front looks across a lake  . will post when we are next at the cottage Franstrahan do come down to visit
  • icarusicarus Member Posts: 31 Courageous
    o whoops just looked back and cant put my post code in the post moderators will have to remove it again  sorry!!! however you can look at snettisham rspb reserve on google earth 
  • FranstrahanFranstrahan Member Posts: 898 Pioneering
    @icarus
    Know where you are. I think it would be ok to post some photos here, of the cottage and the surrounding area.
    Somebody please tell me if I'm wrong.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Franstrahan and @icarus, you are welcome to post photos of the property. Please note that this is not a site to advertise things so please do bare this in mind.
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Hi Pollyanna1052,
    I have the same problem. I need to go into respite care while I have the adaptions done to my home and they also want to send me to a residential home. Like you it doesn’t feel right. My brain is working fine and a lot of these places look ok until the residence come out. I know this because my mums has dementia and is in a residential care home. I don’t want to go in place I don’t fit in. It’s kinda doesn’t make as these residential care homes cost more than if they were to just give you your respite fund. I think what is happening with the council just want to keep a tight reign on where this money is being spent. 
    We need to dig our heels in fight our corner. Social services seem to pigeon hole people in the same bracket and don’t see us as individuals. It’s very sad but social workers stretch and it’s just easier to put us in these places, not thinking of the mental anguish it causes.  Speak to your social worker and say it will be detrimental to mental stability.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Pollyanna1052
    Have you looked at Revitalise. Its a place you can go for a holiday or respite care and is totally disable accessible and has lots to do. It’s full of mix age people and they have these places all over the place. I have pasted the link below for you to look at.

    https://revitalise.org.uk/

    Hope this is of some help.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    edited January 2020
    Well folks...yesterday turned into Black Friday and it was nothing to do with buying a bargain.

    Bear with me here..

    you know I started a new care agency on Monday 30th Dec....well they started...had 3 lovely lasses came plus the agency owner and together we got through my routines of getting up and going to bed...all fine.
    Well I had to sack them yesterday!!!!

    I spoke to my social worker and direct payments team and they gave me an awful time. My head was throbbing. I had to make about 6 phone calls.

    It seems the agency is too dear. But because I knew they charged £17.50 an hour weekdays and £22.50 an hour at weekends, I adjusted the hours I was given from 11 to 9.5 to allow for the difference in cost. The council will pay £16.74. an hour. They say I was assessed as needing 11 hours a week and I am not allowed to alter that figure. They say if I am managing with 9.5 hours a week, then everything will need to be re-costed accordingly.

    So I adjusted the put to bed call from 1 hour to .75 hr. WEll they wont have it...unless I top it up myself. That would cost me £23.47 a week on top of the £39.22 a week I am already paying.

    That`s a total of £250.76 a month.  or £3,009.12 a year!!!! I simply cannot afford these extra costs.

    Plus besides this, the council have stripped me of my respite fund of £2,184 a year and said I now have to take my respite breaks in nursing homes...BUT....further more...they want me to pay a minimum of £80 a week towards the cost!!!!

    Are you still with me?...thanks to all who have made it so far....

    Now to add even more bruises.....the council has got 50% cost of my care from Continuing Health Care (NHS)....so what with all this jiggery pokery going on, they`ve done well out of me.

    And all this happened because I rang to ask for help.
     Thankyou very much for reading. I am not a happy bunny!

  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Rifi7 said:
    Pollyanna1052
    Have you looked at Revitalise. Its a place you can go for a holiday or respite care and is totally disable accessible and has lots to do. It’s full of mix age people and they have these places all over the place. I have pasted the link below for you to look at.

    https://revitalise.org.uk/

    Hope this is of some help.

    Yes I had thought of revitalise...but their charge is almost £2,500 PER WEEK....due to my level of need. So I know what a waste of time it would be asking for that!
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    edited January 2020
    Rifi7 said:
    Hi Pollyanna1052,
    I have the same problem. I need to go into respite care while I have the adaptions done to my home and they also want to send me to a residential home. Like you it doesn’t feel right. My brain is working fine and a lot of these places look ok until the residence come out. I know this because my mums has dementia and is in a residential care home. I don’t want to go in place I don’t fit in. It’s kinda doesn’t make as these residential care homes cost more than if they were to just give you your respite fund. I think what is happening with the council just want to keep a tight reign on where this money is being spent. 
    We need to dig our heels in fight our corner. Social services seem to pigeon hole people in the same bracket and don’t see us as individuals. It’s very sad but social workers stretch and it’s just easier to put us in these places, not thinking of the mental anguish it causes.  Speak to your social worker and say it will be detrimental to mental stability.

    I went to have a look at a new build nursing home. It is beautiful, with ultra modern décor and furnishings. They want £1015 per week. Huh...no ta! The limit for funding is £700.


    The attitude of my social worker and Direct Payments team is very harsh and unbending.
    I wish I could tell them to shove it!
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Pollyanna I had the same problem with my carers. I don’t know if you remember I spoke to you when I first joined the forum as I didn’t want carers, then I found a really nice agency near to me with lovely people. Like you this agency was charging more per hour than the council was willing to pay, and like you I thought I could cut the hours down to cover the cost of the care, but like you the council refused to cut down the hours to allocate hours. I feel your frustration as I have exactly the same thing happening to me also.  The council say they have a duty of care but they don’t seem to listen to our needs. They are just interested in cutting corners wherever they can to the detriment of others. I’m thinking of going to my local MP although I’m not sure what my MP can do. Do you have any ideas of what we can do.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    My daughter is a support worker and used to work with disabled adults in the community, she changed her job last year but i remember her telling me that if you don't use the hours that you're given then they will reduce because they will think you don't need those amount of hours.

    I must admit that hourly rate that you're charge is disgusting. Have you thought about employing a PA? It maybe cheaper for you to do this and could be worth making enquiries.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    I have a PA now. She has been my carer for 12 years and we never had a cross word but then social services got involved and suggested putting her in the pay roll. Since then she has abused her position. I have tried to look for a PA but unfortunately most people want to be paid cash in hand.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    At the moment Care in Finance are managing my e-card so I have no idea what money is left on it.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Rifi7 said:
    I have a PA now. She has been my carer for 12 years and we never had a cross word but then social services got involved and suggested putting her in the pay roll. Since then she has abused her position. I have tried to look for a PA but unfortunately most people want to be paid cash in hand.

    Have you contacted Care In Finance or your local council that deals with your personal budget like i advised on your other thread?
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Care in Finance aren’t back until 6th January. Yes I read your thread and yes I will be in contact with them and will arrange for a timesheet to given for my carer to sign, that way she only gets paid for the hours she does.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Poppy12345 Thank you for your advice. Hopefully I will be able to sort out this situation. If it wasn’t for this forum I wouldn’t have found out about the timesheet as Care in Finance had not told me this.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi all....a topic which causes us great hardship and concern.

    I`ve never heard of Care in Finance....are they council run?

    I have spoken to my Care Charging dept and I did keep kicking against the charges I am forced to pay. Got them down from £82.22 to £59.22 and finally agreed on £39.22...this is PER WEEK! I kept coming up with more things to claim for eg laundry, replacement bedding, electricity usage, wet room loan.No poultry amount to us on low incomes, eh?

    I have a carer who has been with me going on 9 years. She was self employed for a few years and then was forced to go on Payroll or I had to sack her. The council say no more self employed carers allowed.
    She used to do 22 hours plus 2 sleepovers, but her mother is ill and so she reduced her hours.

    Now she does 16 hours plus 2 sleepovers. It works well.

    I recently lost a carer who did 6 hours, but has left as she got more hours elsewhere.

    Hence I needed to find a replacement. The hours now since my dreadful re-assessment are bitty....I`m sure no-one else will pick them up.....ie 1.25 hr am  then back for 1 hour pm....anyone driving here for 11 hrs a week at £9.07 an hour gross would be well out of pocket.

    So I got an agency...they began on Monday and I was told they were too dear, by my social worker. So I have now to pay even more towards it...£25 a week. Having a PA as opposed to an agency doesn't guarantee cover for holidays and sick.

    There`s no-one who will fight the council as they are water tight rigid bureaucrats. We are in their hands. I doubt very much an MP could do anything. Might be worth a try RIfl, but I don't have the energy.

    My care costs to me is now £255.22 per month. When I finally pay my mortgage off, they`ll want a hell of a lot more.

    We never expected our retirement to go belly up like this.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    It’s disgusting. This system they have in place just doesn’t work. When I first needed carers about six years ago, a social worker would come out, do an assessment and do all the paperwork, then a carer would be sent. Now your given an e-card which they say you have more control of your care, but you don’t. The Council are just trying to save on manpower and want us to do their work.

    Dont be disheartened. I know you probably tired and I know it drags you down but you can’t let the council get away with it. What have you got to lose. Contact your MP, you might be surprised.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Care in Finance manage my PA payroll. The manage her national insurance, tax and pay her when she’s on holiday. I pay them a fee every month to this, which they take off my e-card. Google them.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Rifi7 said:
    It’s disgusting. This system they have in place just doesn’t work. When I first needed carers about six years ago,

    In another thread you said you had recently started receiving care in around April of last year. https://community.scope.org.uk/discussion/66305/refusing-care#latest

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Rifi7Rifi7 Member Posts: 188 Pioneering
    Poppy123456 when I first came on this site I was lost and confused. 

    Firstly I was told in February that I was going to eventually lose sensation in my leg and be fully wheelchair bound. After my consultant had diagnosed me, then I got visits from social services, occupational therapist and the wheelchair people.

    Then I was told my carer who I had for 12 years would be on the payroll and that kind of messed things up with us as she had started to change and abuse her position. I also had to adapt to a new care agency coming at the weekend. 

    Then my twin brother got diagnosed with cancer in May and died in July. Burying my twin brother was the worst thing that could have ever happened to me.

    At the time of coming on this forum I didn’t want to adapt to another carer as I didn’t want to except that I needed help. It all seemed overwhelming and I was confused, so yes I didn’t know what I needed. I have another carer now who visits at the weekend and she’s very nice, but still I don’t like the fact I need someone.
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